Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation

Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.     

自闭症谱系障碍的症状、诊断与干预

自闭症谱系障碍(autism spectrum disorders, ASD)是一种广泛发展障碍, 以社会交往障碍、言语和非言语交流缺陷、兴趣狭窄和行为刻板等为主要临床特征。对ASD的准确诊断是早期干预的关键, 也对患者的康复及其家庭幸福产生积极作用。日渐增长的发病率促进了对早期识别、诊断评估、以事实为基础干预的重视。在探索药物治疗ASD的基础上, 中国传统医学方法, 尤其是“靳三针”治疗ASD获得越来越多的实证支持。可以根据Simpson等人(2005)提出的指标体系对各种干预和治疗方法的疗效进行评价。今后研究将从认知神经科学的视角, 尤其是将眼动技术与ERP、fMRI相结合, 探索ASD的核心症状表征以及各亚类的特异性。     

Fostering Resilience among Couples Coparenting a Young Child with Autism: An Evaluation of Together We Are Stronger

Abstract

The purpose of this study was to evaluate a 4-week caregiver training program designed to promote resilience among couples raising a child with Autism Spectrum Disorder (ASD). Seven couples with a child between the ages of 3 and 9 completed a group-based training focused on values, communication, coparenting, and managing stress. Pre-post assessment of parenting stress, dyadic satisfaction, coparenting, life satisfaction, and hope showed that although parenting stress did not decrease, significant increases were observed in dyadic cohesion, coparenting, and hope. Implications for the development of couple-focused interventions to promote resilience among parents raising a child with ASD are discussed.     

Parenting Interventions for Children with Autism Spectrum and Disruptive Behavior Disorders: Opportunities for Cross-Fertilization

Empirical support exists for parent training/education (PT/PE) interventions for children with disruptive behavior disorders (DBD) and autism spectrum disorders (ASD). While the models share common roots, current approaches have largely developed independently and the research findings have been disseminated in two different literature traditions: mental health and developmental disabilities. Given that these populations often have overlapping clinical needs and are likely to receive services in similar settings, efforts to integrate the knowledge gained in the disparate literature may be beneficial. This article provides a systematic overview of the current (1995–2005) empirical research on PT/PE for children with DBD and ASD; attending to factors for cross-fertilization. Twenty-two ASD and 38 DBD studies were coded for review. Literature was compared in three main areas: (1) research methodology, (2) focus of PT/PE intervention, and (3) PT/PE procedures. There was no overlap in publication outlets between the studies for the two populations. Results indicate that there are opportunities for cross-fertilization in the areas of (1) research methodology, (2) intervention targets, and (3) format of parenting interventions. The practical implications of integrating these two highly related areas of research are identified and discussed.     

Mainland Chinese students’ self-appraisals of their psychological dispositions at school

This paper reports mainland Chinese students’ self-appraisals about their psychological dispositions whilst at school. Increasing interest has turned to factors such as resilience, wellbeing, flourishing, happiness and satisfaction, which in turn are predicted to be associated with factors such as emotional stability, achieving personal goals, social fulfilment and quality of life. Such psychological dispositions are developed in conjunction with the influences of social systems such as schools. Although a number of researchers have collaborated with schools to investigate students’ dispositions in English speaking countries, similar research in mainland China is in its infancy. This is particularly the case for studies that seek students’ own perspectives. We administered a questionnaire about resilience, flourishing, wellbeing, self-concept, school satisfaction, mental health, and happiness at school to 2756 students in Years 5–9 in mainland China. As expected with a non-clinical population, most students reported positively across the various scales. However, dividing the sample into subgroups enabled the creation of stratified visual profiles that showed significant differences between students with different backgrounds, such as gender, age, and mental health. This study illustrates the importance of subgroup analyses to identify potential areas of concern for different types of students, which in turn may inform differentiated school-based intervention programs to support students to flourish.     

Parent Perspectives of an Evidence-Based Intervention for Children with Autism Served in Community Mental Health Clinics

Research suggests that improvements to community mental health (CMH) care for children with autism spectrum disorders (ASD) are needed. Recent research examining the feasibility of training CMH therapists to deliver a package of evidence-based practice intervention strategies (EBPs) targeting challenging behaviors for school-age children with ASD offers initial support for such efforts to improve care. Specifically, quantitative data from a recent pilot study indicate that CMH therapists with limited ASD experience can deliver an EBP intervention with fidelity and perceive it as useful to their practice. Further, client attendance is high and children demonstrate improvement on standardized measures. To further understand the feasibility and impact of training CMH therapists to deliver EBPs, this mixed-methods study examined parent perspectives of the process and impact of outpatient psychotherapy for 13 parents of children ages 5–13 with ASD whose therapists were trained to deliver the EBP intervention. Results complement and expand previously reported quantitative data on psychotherapy process indicating that parents are highly involved in treatment for their children, perceive a strong therapeutic alliance with their children’s therapist, and highlight that treatment was different once therapists began delivering the intervention. Results also indicate themes related to parents’ perceptions of positive child and parent outcomes that provide important details on the specific gains that were observed during treatment. Study findings underscore the importance of parent perspectives in understanding the process and impact of implementing EBPs in CMH settings for families of children with ASD.     

Interventions for Children With Autism Spectrum Disorders in Inclusive School Settings

Students with ASD present unique challenges to school systems. Despite these challenges, federal laws require that schools implement research-based practices in the least restrictive environment (LRE). The LRE is often deemed to be the general education classroom and the primary intervention agent is often the classroom teacher. Ensuring students with ASD receive effective intervention in these least restrictive and inclusive school settings will depend, in part, on the extent to which teachers and school personnel are prepared to implement research-based interventions. The purpose of this article is to provide a summary of research-based interventions for students with ASD. Our focus in this summary is on interventions that can be implemented in inclusive school settings by teachers and classroom support personnel. We first provide a general overview of interventions designed to reduce challenging behavior, teach communication skills, and improve social relationships. This is followed by a discussion of the obstacles to intervention implementation that may be present in school settings. Finally, we conclude by offering a list of intervention guidelines.     

Lessons Learned About Barriers to Implementing School-Based Interventions for Adolescents: Ideas for Enhancing Future Research and Clinical Projects

The majority of youth with mental health problems do not receive treatment, highlighting the critical need to transport evidence-based interventions into community settings, such as schools. Despite being able to reach a large number of adolescents and minority youth, the process of implementing evidence-based interventions to schools is challenging. This paper discusses some expected and unexpected challenges experienced during the implementation of an open trial and a pilot randomized controlled trial examining the acceptability and effectiveness of a school-based preventive intervention for adolescents at risk for internalizing disorders. First, we highlight key programs and findings on preventive interventions for adolescents at risk for depression and anxiety. Next, we provide a brief overview of the preventive intervention we implemented in schools. This provides a context for the section that describes implementation issues and highlights specific challenges and potential solutions for intervention implementation. Finally, the paper offers recommendations for researchers and clinicians interested in implementing school-based mental health services for adolescents.     

Parent Perspectives on Community Mental Health Services for Children with Autism Spectrum Disorders

The community mental health (CMH) system provides treatment for behavioral and psychiatric problems in children with autism spectrum disorders (ASD). Although parent stakeholder perspectives are important to improving care, these perspectives have not been systematically examined for this population in the CMH sector. Twenty-one semi-structured qualitative interviews were conducted with parents of children with ASD who received services in CMH clinics. Themes related to child clinical histories, service access and experiences with the CMH system revealed a specific trajectory of service need identification, obtaining a diagnosis, and experience with services. Each trajectory stage was marked by high parent stress. Results provide information about the characteristics of children with ASD served in community mental health clinics and direction for targeted improvement efforts.     

Emotion Regulation in Adolescent Well-Being and Positive Education

Emotion regulation (ER) becomes increasingly important across adolescent development, and promotes psychological flexibility, resilience and well-being in youth. Positive education programs (PEPs) combine academic training with positive psychology interventions (PPIs) to increase well-being and reduce mental ill-health. Despite considerable overlap between PPIs and ER models, the role and relevance of ER to PEPs remains unclear. This review aimed to evaluate the relationship of ER to PEPs targeting adolescents. First, to evaluate the relationship of ER to domains of well-being targeted by school-based PPIs. Second, to examine whether school-based PPIs can improve adolescents’ ER capacity. Third, to evaluate the role of ER in well-being outcomes of PEPs. Results support the relevance of ER to domains of well-being outlined by the revised PERMA model, including positive emotions, engagement, relationships, meaning, and health. ER can influence the degree to which students benefit from PEP participation. It remains to be determined whether ER capacity is improved as a result of exposure to positive education programs. Findings are limited by the small and heterogeneous group of interventions examined, and the use of inconsistent ER measures. Further research of the role of ER in positive education may contribute to greater understanding of the mechanisms underlying their effectiveness and further promote the psychological well-being of adolescents.     

Student-Teacher Relationships and Early School Adaptation of Children with ASD: A Conceptual Framework

In this conceptual article, we integrate existing literature on early school transitions, ecological systems theory, and student-teacher relationships to propose a framework for investigating the transition to school for children with autism spectrum disorders (ASD). A review of the literature suggests that the quality of early student-teacher relationships may play an important role in this process for young children with ASD. Factors important in predicting student-teacher relationship quality, and ultimately, early school outcomes, are derived from the existing literature, which is heavily focused on the experiences of typically developing children. Hypothesized direct effects of child characteristics, teacher factors, classroom/school characteristics, and parent-school connectedness on student-teacher relationship quality are set forth. Potential moderators of the relation between student-teacher relationship quality and child outcomes are proposed, including child cognitive functioning, child relationships with other school staff, classroom placement, and parent involvement. Continued research on these factors will help identify malleable targets for school-based intervention with teachers and children with ASD to enhance student-teacher relationship quality and, in turn, school adjustment for this student population.     

Evolution of Research on Interventions for Individuals with Autism Spectrum Disorder: Implications for Behavior Analysts

The extraordinary success of behavior-analytic interventions for individuals with autism spectrum disorder (ASD) has fueled the rapid growth of behavior analysis as a profession. One reason for this success is that for many years behavior analysts were virtually alone in conducting programmatic ASD intervention research. However, that era has ended. Many investigators from other disciplines are now carrying out large-scale intervention studies and beginning to report successes of their own. The increasing number and range of studies has the potential to improve services for individuals with ASD, and it challenges behavior analysts to intensify their research efforts.     

Broader Autism Phenotype in Parents of Children with Autism: A Systematic Review of Percentage Estimates

The broader autism phenotype (BAP) is a collection of sub-diagnostic autistic traits more common in families of individuals with autism spectrum disorder (ASD) than in the general population. BAP is a latent construct that can be defined using different domains, measured using multiple instruments, and reported using different techniques. Therefore, estimates of BAP may vary greatly across studies. Our objective was to systematically review studies that reported occurrence of BAP in parents of children with ASD in order to quantify and describe heterogeneity in estimates. We systematically searched PubMed and Scopus using PRISMA guidelines for studies quantifying percentage of parents of children with ASD who had BAP. We identified 41 studies that measured BAP in parents of children with ASD. These studies used eight different instruments, four different forms of data collection, and had a wide range of sample sizes (N?=?4 to N?=?3299). Percentage with BAP ranged from 2.6% to 80%. BAP was more prevalent in fathers than mothers. Parental BAP may be an important tool for parsing heterogeneity in ASD etiology and for developing parent-mediated ASD interventions. However, the variety in measurement instruments and variability in study samples limits our ability to synthesize estimates. To improve measurement of BAP and increase consistency across studies, universal methods should be accepted and adopted across studies. A more consistent approach to BAP measurement may enable efficient etiologic research that can be meta-analyzed and may allow for a larger evidence base that can be used to account for BAP when developing parent-mediated interventions.     

The Link: An Alternative Educational Program in the Netherlands to Reengage School-Refusing Adolescents With Schooling

Facets of school life affect the development and maintenance of school refusal (SR). These facets will warrant attention during intervention for SR. This paper considers a range of school-related factors associated with SR, grouped according to five domains of school climate. It also describes school-based interventions for SR in the form of alternative educational programs (AEPs). The paper then presents the Link, an AEP for Dutch adolescents with SR. The Link offers an educational setting that addresses school-related factors associated with SR. After participation in the Link, adolescents are helped to return to a more typical educational setting. Based on a review of 30 case files, we provide an account of adolescents who have participated in the Link. Often, these adolescents displayed chronic and severe SR, met criteria for anxiety or depressive disorders, and were diagnosed with an autism spectrum disorder. The Link process is illustrated via a case vignette. Thereafter, the role of AEPs in the treatment of SR is discussed.     

Social isolation, psychological health, and protective factors in adolescence

This study investigates the relationships among social isolation, psychological health, and protective factors in adolescents. Feelings of social isolation may influence psychological health in adolescents, but protective factors such as family connectedness, school connectedness, and academic achievement may also play a key role. The sample included 4,746 adolescents from 31 middle and high schools. Participants responded to 221 survey questions regarding peer relationships, psychological health, school connectedness, family relationships, and academic achievement. The findings revealed that social isolation was associated with an increased risk for depressive symptoms, suicide attempts, and low self-esteem. Protective factors influenced associations between social isolation and psychological health. Implications for prevention such as building healthy peer relationships, promoting family connectedness, and developing school-based interventions are discussed.     

After School Care for Children on the Autism Spectrum

Few programs exist for after school care designed to support children with Autism Spectrum Disorder (ASD). Not only do parents often depend on after school care, but also children with ASD are likely to benefit from opportunities to generalize skills in an authentic setting and interact with typically developing peers. This lack of support occurs at a time during which there is increasing research and community awareness regarding the need for high quality after school programs to support typically developing children. This study investigates reported experiences with and needs for after school care by parents of children with ASD. Survey results (N = 54) revealed that the majority of parents surveyed desired after school programs within their child’s school but are often denied access to such services or received low quality care for their child in after school programs. Recommendations are provided for future research and program development.     

The Effectiveness of Cultural Adjustment and Trauma Services (CATS): Generating Practice-Based Evidence on a Comprehensive, School-Based Mental Health Intervention for Immigrant Youth

A collaborative study of Cultural Adjustment and Trauma Services (CATS), a comprehensive, school-based mental health program for traumatized immigrant children and adolescents, was conducted to generate practice-based evidence on the service delivery model across two school districts. Program effectiveness was assessed by testing whether client functioning and PTSD symptoms improved as a result of 7 separate service elements. An array of clinical services including CBT, supportive therapy, and coordinating services were provided to all students, and an evidence-based intervention for trauma, TF-CBT, was implemented with a subset of students. Greater quantities of CBT and supportive therapy increased functioning, while greater quantities of coordinating services decreased symptoms of PTSD. TF-CBT services were associated with both improved functioning and PTSD symptoms, although TF-CBT was implemented with fidelity to the overall comprehensive service model rather than the structured intervention model. Results suggest the comprehensive school-based model was effective, though different service components affected different student outcomes. Implications of these findings for immigrant mental health interventions and implementing structured evidence-based practices into community mental health programs are discussed. Suggestions are made for future research on existing mental health practices with immigrants.     

A Meta-Analysis of Behavioral Interventions for Adolescents and Adults with Autism Spectrum Disorders

Evaluation of evidence-based treatments is important for adolescents and adults with autism spectrum disorders (ASD) given the increasing number of interventions available and the prevalence of ASD. In this study, we sought to evaluate the effectiveness of behavioral interventions for this population by conducting a meta-analysis of published single-case research studies. A new metric for calculating effect size in single-case research, nonoverlap of all pairs, was utilized. In addition, the certainty of evidence, a system to evaluate research methodology, was applied to the reviewed articles. Forty-three articles were identified in the study. Results suggested that the behavioral interventions in the areas of academic skills, adaptive skills, problem behavior, phobic avoidance, social skills, and vocational skills have medium-to-strong effect sizes. Medium-to-high confidence in findings was noted for 81 % of the studies in the meta-analysis; however, three-fourths of the reviewed studies did not include treatment integrity, which may affect the ability to draw conclusions about the effectiveness of the interventions. Overall, the evidence is promising for the use of behavioral interventions for this population; however, additional research and dissemination are needed to fill the gap between research and practice in order for practitioners to meet the increasing demand as individuals with ASD age.     

Attitudes Toward Adoption of Evidence-Based Practices: A comparison of Autism Early Intervention Providers and Children's Mental Health Providers

Across the country, states are reporting increases in the number of children with autistic spectrum disorders (ASD) served each year in the early intervention system. Research examining factors impacting the successful dissemination and implementation of evidence-based practice (EBPs) into service systems for these children is limited. Preliminary information indicates that adoption of EBPs is variable. Provider attitudes toward the adoption of EBPs may be one factor that limits or facilitates implementation of efficacious treatments and these attitudes vary by organizational context and provider individual differences. The current study examines cross-context differences in provider attitudes toward EBPs by comparing the attitudes of 71 education-based early intervention providers working with children with ASD to the attitudes of 238 mental health providers in the public mental health system. This provides the first examination of ASD early intervention provider attitudes toward EBP. Results indicated that early intervention providers reported significantly more favorable attitudes toward adopting EBPs than did mental health providers. Early intervention providers with extended experience in the field perceived less divergence between their current practice and EBPs. Implications are discussed.     

Immigrant Families’ Perception of the Causes,First Manifestations,and Treatment of Autism Spectrum Disorder

Compared to families from their host country, families from immigrant backgrounds who have a child with autism spectrum disorder (ASD) tend to experience greater difficulties in accessing, using, and complying with intervention services for their child. This disparity may be partially accounted for by cultural differences in how families perceive the causes and symptoms of ASD as well as their treatment priorities. The present study sought to document these perceptions in immigrant families living in a Canadian city. Forty-five parents from Latin America, Africa, Western and Eastern Europe, the Caribbean, East Asia, and the Middle East participated in a semi-structured interview. These data were examined qualitatively through thematic analysis to first document all parents’ perceptions, then to contrast mothers’ and fathers’ responses, and finally to examine common themes as a function of country of origin. The most frequently mentioned causes of ASD were environmental factors such as vaccines and diet. Moreover, some participants did not know the cause of their child’s ASD. The majority of parents cited the absence of speech as one of the first symptoms noted in their child. Priorities for intervention varied: mothers tended to prioritize speech therapy, whereas fathers favored support in school. Taken as a whole, these findings highlight the need to implement informational programs for these families.